In response to requests for more information about the 4 Key Indicators, we are developing a series of blogs aimed at addressing some of the important issues you need to know.

Background Introduction

In order to meet the eligibility criteria for NHS Continuing Healthcare Funding (CHC) your relative must have a ‘primary health need’. In short, this means that the primary or overriding reason for their care must be due to healthcare, rather than social care, needs.

Understanding the basic distinction between health needs and social needs is essential as it underpins the whole ‘primary health need’ approach. If you are not familiar with these concepts, we recommend that you read these helpful articles:

Part 1 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

The Assessment Process

In order to be awarded CHC, there is an assessment process which NHS Clinical Commissioning Groups (CCGs) have to follow, starting with an Initial Checklist assessment. The Checklist is a scoring tool to determine whether the individual will pass on to the next stage: a full assessment.

For more information about the Checklist assessment, read: Understanding the Checklist Assessment

The full assessment is carried out by a Multi-Disciplinary Team (MDT) using the Decision Support Tool (DST). The DST is not the assessment itself, but is merely a useful ’tool’ to gather together and record the evidence of needs in one document, and assist the MDT to reach a conclusion as to eligibility for CHC Funding. The DST looks at certain areas of need, called Care Domains, namely: Breathing*, Nutrition – Food and Drink, Continence, Skin integrity (including tissue viability), Mobility, Communication, Psychological and emotional needs, Cognition, Behaviour*, Drugs/Medication/Symptom control*, Altered states of consciousness* & Other.

Below is a copy of the image taken from the National  Framework listing all 12 Care Domains and shows the interaction between the intensity, complexity and/or unpredictability of needs:

Each Care Domain is broken down into a number of levels. The levels represent a sliding scale from the lowest to highest, with: ‘N’ (No needs) at the bottom end of the scale, increasing to ’L’ (Low), ‘M’ (Moderate), ‘H’ (High), ‘S’ (Severe) and ’P’ (Priority) needs at the highest possible level of need and support required.

Completion of the DST should result in a comprehensive picture of the individual’s needs that captures the nature, intensity, complexity and/or unpredictability of their needs and indicates the quality and/or quantity (including continuity) of care required to meet those needs.

The DST contains a summary sheet to provide an overview of the levels chosen and a summary of the individual’s needs, along with the MDT’s recommendation about eligibility or ineligibility. The guidance gives a clear recommendation (and decision) that eligibility for NHS Continuing Healthcare would be expected in each of the following cases:

• A level of ‘Priority’ needs in any one of the four Domains that carry this level (also marked * above).
• A total of two or more ‘Severe’ needs across relevant Care Domains.

You can learn more about the MDT assessment in the blogs at the end of this article.

The MDT’s Approach

When carrying out a full assessment to determine whether the individual has a primary health need, and is therefore eligible for CHC Funding, the MDT are supposed to take a holistic approach and consider the totality of the individual’s care needs.

Eligibility for CHC Funding is not contingent on any particular diagnosis or medical condition, but rather on the daily needs of the individual and whether these fall into the category of health or social care. To correct a common misunderstanding, a diagnosis of Dementia or Alzheimer’s alone, does not guarantee CHC Funding. The MDT have to look at the whole picture of overall needs (holistic) and consider their interaction as a whole (totality). We will explore the interrelation of healthcare needs in more detail later in the series.

While the distinction between health and social care can be difficult to define, social care needs are often thought of as being assistance with the things we all need to do every day: washing, dressing, eating, drinking, moving around, going to the toilet, taking routine medications, applying prescribed creams. The NHS refer to them as Activities of Daily Living (ADL).  If a person’s primary need is for social care, i.e. assistance with such routine daily activities of living, responsibility falls to the Local Authority, who carry out means-testing to gauge the individual’s ability to fund that care.

CHC Funding, however, is concerned specifically with the health needs of the individual; i.e. those needs that can only be met by a registered nurse or other similarly skilled professional. Health needs must be such that a registered nurse, or similarly skilled professional, is required 24-hours a day to provide necessary care. If the individual’s primary (overriding) need is for healthcare, then all of their care (including accommodation and daily social needs) should be funded in full by the NHS, free of charge, via an NHS Continuing Healthcare package. Unlike social care, CHC is not means-tested and is paid by the NHS irrespective of wealth and savings.

Such needs that require the sustained input of a registered nurse, or other similarly skilled professional, might include:

• Severe behavioural problems, such as unpredictable physical aggression, absconding or self-harm – such that there is a serious risk of harm to self or others.

• Severe psychological disturbance, requiring regular pharmacological intervention and referrals to Mental Health Services.

• A physical condition such that there is serious risk of injury upon movement or transfer, or whereby the positioning of the patient is crucial – e.g. to aid breathing.

• Problems with swallowing food/drink/medication, requiring regular monitoring by Speech and Language Therapy. Even with such intervention, the patient may still aspirate (inhale liquids/food particles into the lungs), requiring skilled intervention and/or suction to clear the airways.

• Problems with continence beyond routine care; for example, a problematic catheter requiring frequent changes/washouts, or severe constipation requiring the frequent administration of enemas and/or performance of manual evacuations (manually removing faeces from the rectum/sigmoid colon).

• Significant tissue breakdown caused by pressure sores or other skin conditions, such that the integrity of the underlying tendons/muscles/bones is compromised or at risk. The patient requires regular dressing changes – daily or more frequently – and supervision by Tissue Viability Nurses to ensure the wound does not degrade further.

• Sustained difficulty in breathing, requiring the regular administration of oxygen or other inhalants. Even with such intervention, the patient continues to have difficulty in breathing and all Activities of Daily Living are affected.

• A complex or frequently changing medication regime, requiring regular oversight by the GP or Consultant. The route of medication may be complex – intravenous – or the type of medication may be high-risk, e.g. licenced painkillers, such as morphine.

• Severe and unrelenting pain, such that frequent in-the-moment decisions regarding the administration of licensed analgesics need to be made, and the patient’s mental and physical wellbeing are affected.

• Frequent (weekly, daily or several times each day) episodes of Altered States of Consciousness – e.g. transient ischaemic attacks, cerebrovascular accidents, epileptic seizures – requiring skilled intervention or A&E admission to minimise the risk of harm.

Eligibility for CHC Funding is not contingent on a certain combination of levels of need across the 12 Care Domains within the DST, (except as above, in cases of automatic award when an individual has one ‘Priority’ level of need or two ‘Severe’ levels of need), but rather on the fulfilment of one or more of the Key Indicators (sometimes referred to as ‘Characteristics’), namely: Nature, Intensity, Complexity and Unpredictability.

A description of the 4 Key Indicators is set out in paragraph 59 of the National Framework for NHS Continuing Healthcare and NHS funded Nursing Care (revised October 2018), and are summarised below:

NATURE: The nature of the patient’s needs addresses the necessary quality of the service to be provided to the patient, and whether a local authority should lawfully be expected to provide it.

INTENSITY: Intensity of needs evaluates the quantity and degree of needs, as well as the continuity of care necessary to treat those needs.  Where a Local Authority funds aspects of healthcare, the primary need must be for accommodation and/or social care.

COMPLEXITY: The complexity of needs is concerned with how the needs present and interact to increase the skill needed to monitor the symptoms, treat the condition(s) and/or manage the care.  This can arise with a single condition or can also include the presence of multiple conditions or the interactions between two or more conditions.

UNPREDICTABILITY: The unpredictability of needs addresses the degree to which needs fluctuate, creating challenges in managing them, and the degree of risk to the person’s health if adequate and timely care is not provided.  For the purposes of this indicator, someone with an unpredictable healthcare need is likely to have either a fluctuating, or unstable or rapidly deteriorating condition.

Each of these 4 Key Indicators may, alone or in combination, demonstrate a primary health need, because of the quality and/or quantity of care that is required to meet the individual’s needs.

A ‘Priority’ level of need in the Domains of Behaviour*, Breathing*, Medication* or Altered States of Consciousness* would, in and of itself, fulfil at least one of the Key Indicators and demonstrate a primary health need (see Paragraph 141 of the NHS National Framework); either because staff require specialist knowledge to meet the needs (think of a person on invasive mechanical ventilation, or someone whose behaviour is a mortal danger to self or others, or someone who is suffering life-threatening seizures on a daily basis), because interventions take a long time or an increased number of staff, or because the condition is rapidly changing such that Care Plans must be updated weekly, daily or even hourly.

Two ‘Severe’ levels of need in any of the Domains that carry this weighting would result in inherent complexity, due to the interrelation of needs and their impact on one another. It would also likely result in some intensity in terms of the frequency of intervention, the length of time this takes and the number of staff required.

Whereas, Activities of Daily Living – such as eating/drinking, routine toileting/changing of continence pads, changing position/moving around and taking routine medication are considered social needs – none of which require the continued input of a registered nurse or similarly skilled professional. This type of predictable 24 hour care intervention, assistance and support can be delivered routinely by unskilled staff. Even if a person requires full assistance with all activities of daily living, and providing there is no complexity, intensity and/or unpredictability arising from those needs (should they be severely cognitively impaired, unable to communicate, immobile and doubly incontinent), this is classed as social care that can be met by the Local Authority (subject to means-testing).

For example, take an individual who requires full assistance to wash, dress and maintain personal hygiene; who is doubly incontinent and relies on care staff to change their pads regularly and ensure good skin integrity; who is unable to weight bear and requires the use of a full hoist to transfer; who relies on staff to administer their non-complex medication regime, which is routinely prescribed; who is compliant with all care and is described as having a “happy and cheerful outlook”; who does not experience any difficulty in breathing and does not suffer altered states of consciousness; who does not appear to be in any pain. Let’s say, the only Care Domain in which there is some evidence of complexity is ‘Nutrition’ – where the individual has been assessed as being at risk of aspiration and requires their fluids be thickened to assist swallowing; but, there is no evidence of frequent choking episodes requiring skilled intervention to maintain their airway and the individual maintains a healthy weight. A risk of choking is not sufficient to indicate eligibility for CHC Funding, unless there is evidence of a severe impact on wellbeing and the provision of care (i.e. nutritional status at risk; skilled interventions to clear the airway frequently required). In this hypothetical example, the individual’s care interventions would not present with a primary need for healthcare, and as such, they would not eligible for CHC Funding.

For more reading around the subject, look at this selection of articles from our website:

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

Preparing for the Multi-Disciplinary Team Assessment

What Happens At The Multi-Disciplinary Team Meeting?

Don’t let the Decision Support Tool become a ‘tick box’ exercise

What Is The Role Of The MDT Coordinator?

Can The MDT Panel Refuse To Proceed If I Have An Advocate?

Who completes the Decision Support Tool in NHS Continuing Healthcare?

What to do if you’ve been excluded from the MDT Assessment?

It will not come as a surprise to learn that most NHS Clinical Commissioning Groups (CCGs) are generally understaffed and under-resourced, and so have to look externally to recruitment agencies and pay for additional resources. One such area for nurse recruitment is the need for CCGs to carry out regular reviews of existing NHS Continuing Healthcare packages, to determine whether they are still appropriate to meet the recipient’s ongoing healthcare needs or whether funding should be removed.

NHS Continuing Healthcare (‘CHC’) is a package of fully-funded care provided by the NHS free of charge to individuals who have intense, complex and unpredictable healthcare needs. CHC is not means-tested, and is free at the point of need. So, if an individual meets the eligibility criteria, they are entitled to this free care for all their healthcare needs, and this includes the cost of accommodation in a care home or other care facility.

Don’t get CHC confused with social care which is provided by the Local Authority and is means-tested. For more information, read our blogs:

Part 1 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 2 – Explaining The Vital Difference Between Social Needs and Healthcare Needs

Once CHC has been awarded, many families wrongly assume that funding will be in place for the rest of their relative’s life, to cover the cost of care, whether living in their own home or in a care home. That is a fundamental misconception.

The revised National Framework (October 2018) specifically deals with reviews and sets out the guidance. CCGs are obliged to review individuals 3 months after they have received CHC Funding, and again at least every 12 months thereafter, to check that the package of care is still sufficient to meet their ongoing healthcare needs. The underlying intention of the National Framework is that these reviews are not to be used as an opportunity to conduct a fresh reassessment of the individual’s healthcare needs, but are means of genuinely checking that the existing package of care is still adequate to support their needs.

The underlying risk to individuals is that, in some cases these 3 and 12 monthly reviews have given CCGs a veiled excuse to remove existing CHC.  Annual reviews can lead to CHC Funding being withdrawn arbitrarily based on flawed assessments, incorrect information or insufficient knowledge of the patient’s day-to-day needs.

Our caretobedifferent website contains many personal experiences shared by contributors, detailing how their relative’s CHC Funding was wrongly withdrawn after a review, only for it to be reinstated following a lengthy and tortuous appeal.

Why was CHC Funding wrongly withdrawn? Because it’s all to do with saving money!

We know that the NHS has to save £855m by 2021, and so, these reviews can potentially present an opportunity for CCGs to screen individuals out of the system, and in doing so, put them through the frustrating process of appealing if they believe the decision is wrong.

So, if your relative’s CHC package of care is withdrawn incorrectly, the burden now shifts to you to appeal. That is no simple task and you can expect an uphill battle fighting the NHS to get their funding reinstated.

Inevitably, some families will simply give up or be left floundering, not knowing how to go about appealing successfully, and what is really expected of them in the appeal process. Others who try and go it alone, are likely to get steam-rolled out of the ballpark by the CCG’s representatives, who can use the rules (ie the National Framework for NHS Continuing Healthcare), to their advantage. Unfortunately, some individuals may not survive long enough to get their CHC Funding reinstated, and so, their current claim for CHC will become a retrospective claim instead, and get kicked into the long grass by the CCG or put on the back burner – until you stir it up. Those who cannot do this themselves or lack the confidence to tackle the CCG, should seek professional advice. Visit our one-to-one page if you need help.

The cost paid to recruitment agencies to supply additional support for these reviews, may seem a waste of valuable NHS resources. But, it is obviously a price that some CCGs are willing to pay – both to help clear their backlog of outstanding reviews – and potentially to save funds at the same time by ‘financial gatekeeping’ contrary to the National Framework.

We agree that CHC Funding should be withdrawn where it is clearly no longer appropriate or where the individual’s healthcare needs no longer exist – as that, too, is a waste of valuable NHS funds.

Equally, we have no objection to CCGs recruiting external resources from outside the NHS, to assist in these reviews, if they are satisfied that is a truly more cost effective option. But, the appointed assessors must be familiar with the patient, know and understand their daily healthcare needs, and be trained in the National Framework. What is not acceptable, in our opinion, is assessors being recruited to undertake reviews, who are apparently clueless as to the individual’s needs (perhaps meeting them for the first time), who don’t understand the National Framework, and who are empowered to make arbitrary decisions which bear absolutely no reality to the patient’s challenging daily needs.

These are potentially life-changing outcomes which could make the difference to having ongoing NHS ‘free care at the point of need ‘, or having to self-fund and pay for it from private means – and in many cases having to sell your home.

The public needs to have confidence in their CCG and be certain that any review of their relative’s CHC award will be conducted properly, fairly and robustly in all cases. Sadly, as many readers will testify, that has not always been the case. So beware! Don’t let your relative’s review of their care package turn into a fresh reassessment of needs, contrary to the National Framework.

Take, for example, the case of John Morrison, featured on BBC’s Victoria Derbyshire show. This is an example of one such disgraceful failing by the NHS. John suffers from cerebral palsy and has no use of his limbs. John is totally dependent on his family and carers to do everything for him. John had CHC in place before it was wrongly withdrawn in 2009 following a reassessment, leaving his family to fight a 10 year battle to seek reinstatement of funding. In the meantime, John’s family are reported to have paid out £300,00 which they are now seeking to recover retrospectively, plus interest. John’s mother, Suzanne, told the BBC, “This is the dark side of the NHS.  This is the hidden side.  This is the disabled side, the dementia side, the Alzheimer’s side…..”

If CHC Funding is removed, then the likely result is that your relative will have to pay for their own care. If you believe the decision is wrong and want to challenge it, then you only have 6 months to lodge an appeal – but again, may be forced to pay for the cost of care (ie self-fund) until the appeal is heard and the outcome is notified to you. Pre-COVID-19, that appeal decision could easily come a year later, costing your relative upwards of £45,000 to £100,000 a year, depending on the particular care home’s annual fees. We deal with appeals extensively in many articles on the subject which you can find on our caretobedifferent website.

But, with the advent of COVID-19 and the recent Coronavirus Act 2020, these 3 monthly and annual reviews are currently on hold. That will benefit those individuals who are already in receipt of a CHC package, as they will now be saved the anxiety and stress of a review, and of course, the risk that their CHC Funding could be withdrawn. However, those whose current package is now inadequate to meet their increasing needs, may well be underfunded. For more information, read our blog:

COVID-19 – The Impact on NHS Continuing Healthcare Funding (‘CHC’) and How The Current Changes Will Affect You!

For further background reading on the subject, also take a look at:

My Dad Has Dementia – So Will He Automatically Qualify For CHC Funding?

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

Let’s Talk Fast Track! Vital NHS Funding Withdrawn After 3 Months – The Latest NHS Controversy…

If your relative has had their CHC Funding improperly or incorrectly withdrawn at a 3 month or annual assessment, and you have mounted a successful appeal, let us know and share your story with others below.

Has your relative’s claim for NHS Continuing Healthcare Funding (CHC) been rejected by the Clinical Commissioning Group at a Local Resolution Panel? If so, you only have 6 months to prepare your case for a final appeal at an Independent Review Panel (IRP) conducted by NHS England. This is your last real chance of securing CHC for your relative. Your success or failure will depend on your preparation of the appeal submissions and how you present the facts in support of your case. A successful outcome could mean that your relative’s healthcare needs are paid in full, free of charge by the NHS; or reimbursed, if claiming restitution for wrongly paid care fees, retrospectively.

Care To Be Different are privileged to be able to offer our readers an exclusive interview with an Independent Review Panel Chair, who shares some handy tips to help you through the appeal process. We believe that this interview is the first of its kind and we hope that the insights provided will give you a better understanding of what goes on, and what is expected of you at an IRP.

Q1. What makes a good written appeal submission?

Chair: Don’t include previous case law for example Pointon, Coughlan or Grogan (the leading cases) – the IRP will know them and the National Framework is considered by leading legal authorities to be compliant with them.

Identify any health care needs that have not previously been properly considered. Many people identify failings of the NHS to follow due process, in their appeal. These failures are unlikely to change whether a person is eligible or not. Eligibility is based purely on health care needs. Your appeal needs to focus on the actual care.  

Keep to the relevant facts.  Don’t be tempted to exaggerate the health care needs. Keep your evidence relevant to the period of time that is being reviewed. This can be very difficult when you are dealing with a period of time that was some years ago. Make your points about the levels of need that you disagree with – look at the descriptions next to the levels of need and decide which one is the ‘best fit’.

A good set of four key indicators is a must. This is the hardest part of the assessment and is often not done well. Essentially, all you need to do is consider all the needs from the Care Domains and how they impact on one another – to impact on the nature, intensity, complexity or unpredictability of the care required. In practice it is quite hard to get right and is generally what most applicants fail to consider.

Q2. How long does the appeal submission need to be?

Chair: There is no required length. I’ve seen appeal submissions that are 100 pages long written by solicitors! You can just say that you disagree with the levels of need and identify which ones, and give a few paragraphs to explain why, but don’t forget to say that you don’t think that the four key indicators were properly considered.

Q3. What are your top tips when preparing an appeal?

Chair: Make sure you used any prescribed form devised by your CCG – some use a document called a Notice of Dissatisfaction; others just request an appeal in writing.

Keep to the facts. If you have documentary evidence to back up your facts, then refer to it giving dates and page references and ensure that the CCG has a copy.

Focus on the care needs, identify what carers needed to do each day and what made it more difficult or time consuming for carers to meet those needs.

Identify if these things have not been properly considered by the NHS.

Q4. Do you have any quick tips for summarising the 4 key indicators?

Chair: Read through the key indicators and familiarise yourself with the kind of things that should or could be considered.

Make sure that you focus on all the needs and how they impact on one another.

Make sure that they show how the needs manifested themselves practically.

The four key indicators should explain what the carers need to do for the person each day, how much time and how much difficulty was involved.

Use the 12 Care Domains to guide you through the sorts of things that need to be included.

Make sure that you add a conclusion to each of the indicators to indicate whether or not you think that indicator was met.

Q5. Why is good preparation for the IRP paramount?

Chair: You get one chance to appeal to the CCG (this is called a Local Review), and then one chance to appeal to NHS England (this is called an Independent Review Panel). The people hearing your appeal can only go on the evidence before them. If you fail to identify the relevant issues at the appeal stages, it is less likely that you will get the right outcome.

Q6. What documents do I need to send to the IRP in advance of the appeal and what should/shouldn’t be included in it?

Chair: Generally, the CCG requests on your behalf any records from the care home, the GP, the local hospital and any specialists involved in the care. Sometimes, only one hospital gets contacted, so check that all the hospitals that were involved have been contacted. Sometimes the GP or care home might have changed, so make sure that the records from the old and the new establishment have been obtained.

Sometimes family members keep their own diary – you might want to include this; if there is a lot of information, highlight what you think is relevant.

If you have any additional records, you can add these to the evidence file in advance.

You should only include evidence relevant to the care needs that occurred during the time period being considered. There is a general rule at the Independent Review Panel that no new evidence can be given on the day of the IRP. This is because all the parties need to be able to read and check the evidence and there is not time on the day. In practice you might only see the file one or two weeks before the IRP, so this might not give you time to add in the evidence you want. If this occurs, you can ask for the IRP to be postponed.

Q7. Why is it essential to keep your arguments succinct?

Chair: The IRP has a lot of evidence to read. Often at IRP the bundle is over 1,000 pages long. The key points get lost if you put in too much information.

Q8. Does the IRP ever make their minds up in advance and predetermine the outcome even before the meeting takes place?

Chair: In advance of the IRP, the panel members will all have been sent a copy of the case file to read and will have prepared by reading the file and recording the key issues and key evidence. On the day of the IRP, you will be asked questions by the IRP to help them to fill in any blanks. The IRP members will also ask the CCG questions. The IRP continue to debate the evidence in the closed part of their meeting; this is after you and the CCG members have left.  This part of the meeting will last 2-3 hours. The IRP will make its conclusions based on the evidence from the file and from the verbal evidence given by you and the CCG. The IRP consists of 3 independent people. They do not discuss the case between them before the IRP. The decision is never made beforehand. In the vast majority of cases, the decision is made on the day, though in some cases the IRP might need to defer their decision whilst they obtain a key document or specialist advice.

Q9. How much of the case has the IRP read in advance of the hearing?

Chair: The IRP will read all the records on the file. They usually get the file one week before the IRP. By the time the case is discussed at IRP, the panel will have a good grasp of the care needs and will only need to ask supplementary questions. If the case file is scant or poorly documented, the IRP will ask you more questions to fill in any gaps in their knowledge. This is when it is very helpful to have family members present.

Q10. Who sits on the IRP panel and what is their background?

Chair: The IRP consists of 3 members:

• a representative from the social services team at the Local Authority; they will know about CHC and what care the LA is legally able to fund
• a representative from the NHS, often a general nurse, mental health nurse or continuing health care worker; they will know about CHC and how various health conditions will impact on the care needs
• a lay person to chair the meeting; they will know about CHC and will have a background in chairing meetings

Each of the 3 members has a voting right in respect of the eligibility decision, though generally the decision is unanimously made. If it is 2:1 this will be recorded in the IRP report with the reasons why the dissenter disagrees.

Q11. Who else can be present?

Chair: A clinical adviser is sometimes present to ensure that the IRP considers fully the impact of any specialist nursing or mental health requirements.

A note taker is usually in attendance to make a written record of the meeting.

The parties will have been invited to attend; this is a representative from the CCG and the family.

Q12. Where does it take place – describe the room layout – where do the parties sit?

Chair: The IRP can take place in any meeting or conference room deemed appropriate by NHS England. It is usually within an NHS owned building or a hotel meeting room. Usually the tables are set out in a square with the panel sitting opposite the CCG and family.

Q13. How long does the IRP usually take?

Chair: Expect to be at the IRP for 2-3 hours, though the Panel will stay for 2-3 hours longer, after the family and CCG have gone.

Q14. What is the format for the IRP?

– e.g. who speaks first, and when does the family get their say, and have the right to challenge the CCG’s representative comments, etc.?

Chair: Normally the IRP is split into 2 halves:

1) The process – this is where any representations are made about the process that has been undertaken by the CCG. The Chair will ask the family about their complaints and ask the CCG to explain what, if anything, went wrong and why.

2) The eligibility – this is where the Care Domains are discussed. The IRP will refer to the levels of need selected in the Decision Support Tool and Local Review. The IRP will ask which levels each party considers is appropriate, and why, and will ask appropriate questions about the health care needs. Then the four key indicators are discussed. The family and the CCG will be asked to present their views on each of the four key indicators.

Throughout, the IRP the Chair will direct one party, then the other to speak. The Chair will prompt and ask the family questions based on the written appeal and the facts that are relevant to be discussed.  The panel members might ask you questions as well. The questions are normally related to the health of your family member, so you are likely to know the answer, but don’t worry if you don’t!  If you don’t agree with what the CCG says, you can say so in the IRP. The IRP will be well used to weighing up the evidence, and if the evidence is against the CCG, the IRP will say so in their report.

Try to give your evidence calmly and without making it personal against an individual.

Q15. How formal is the IRP?

Chair: It’s just a standard meeting. If you are used to meetings, this is no different. If you are not used to meetings, you might feel a bit nervous at first. Remember the panel are just ordinary people. It is the job of the panel to make you feel at ease.

Q16. How should I dress for the IRP?

Chair: Dress however you feel comfortable – there is no code. It can be useful to wear a cardigan or jacket that you can take off or put on if you feel too hot or cold.

Q17. What should families say/not say on the day?

Chair: Keep to the relevant facts, answer any questions truthfully and as fully as you are able. To reiterate, don’t launch a personal attack on specific individuals.

Q18. How do the family address the IRP Chair and other panel members?

Chair: Either as ‘The CCG’ or by their name.

Q19. What is the correct tone of language to be used at the meeting?

Chair: Formal but relaxed. Take your lead from the Chair.

Q20. How adversarial is the Panel meeting – what do you say if you don’t agree with the CCG representative’s comments/arguments – and when do you get your say?

Chair: Different chairs have different styles, and this can affect how formal the meeting feels. It should feel like a formal meeting. It is not as formal as a court or tribunal. Often, if a CCG has got things wrong, they will say so. If you disagree with the evidence that they give, wait till they have finished speaking, get the attention of the Chair and indicate that you would like to respond. A good Chair will be looking at your non-verbal responses and will invite you to respond if appropriate.

Q21. What things winds you up as Chair?

Chair: You can’t ruin your case. Give honest and full answers to the questions put to you. The Chair will guide you if you say too much or not enough. The panel will make their decisions based on all the evidence.

Q22. What is the advantage of having a family member in attendance?

Chair: Many advocates don’t have enough experience or understanding of CHC and approach it badly. I would rather a family member present their case themselves as they are much better able to answer questions about their loved one.

Q23. At what stage do the panel reach their decision e.g. is this in a private meeting after the parties have left the IRP?

Chair: After the open meeting has ended, usually around lunch time, the CCG representative and family members leave. The panel breaks for lunch and on return will go through all the findings from the IRP.  They will discuss and make comments about the process and will debate and select new levels of need in the Domains. They will then revise the four key indicators. The decision is made at the end of the meeting.

Q24. Who types up the decision and how long does it usually take before the family receive the outcome decision?

Chair: The note taker types the minutes in draft form. The Chair is responsible for revising and checking them. The Panel members will be sent the final draft to comment upon. The report is then sent to the CHC lead and is signed off.  It takes 6-8 weeks before you will receive a copy of the report.

Thank you…

CTBD would like to thank the Chair for their insights into an IRP.

Good luck with yours!

Remember, you don’t have to fight this battle alone and are entitled to seek advocacy support to help you with your appeal. But, early preparation is paramount to success. If you need specialist help, visit our one-to-one page.

Visit our website for lots more free information and resources to help with your appeal. In the meantime, here’s a selection of some further reading around the subject that you will find helpful.

‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’

Relief as 6 Month Time Limit To Appeal MDT Decision Is Reinstated

New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…

Know your rights – Appealing the CCG’s refusal to grant CHC funding.

Rejected for CHC Funding? Part 2: How to appeal the Local Resolution Decision

If your relative has a pending assessment or review for NHS Continuing Healthcare Funding, then you must read this article.

Many families undergoing an assessment to see whether their spouse or relative is eligible for NHS Continuing Healthcare Funding (or ‘CHC’) are often left bewildered when they learn that they did not meet the eligibility criteria for CHC, or are astounded and outraged when their existing funding is withdrawn.

In many cases, families will be left distraught and frustrated by the whole challenging process, but much of this anguish could have been avoided had they clearly understood the critical difference between social needs and healthcare needs.

What is NHS Continuing Healthcare Funding?

‘CHC’ as it is commonly known by professionals, is a package of services which is arranged and funded by the NHS through its local Clinical Commissioning Groups (CCGs) for individuals who have complex ongoing ‘primary health care needs’. More about this later…

The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018) states that health care needs relate to the “treatment, control, management or prevention of a disease, illness, injury or disability, and the care or after-care of a person with these needs (whether or not to the tasks involved have to be carried out by a health professional)“.

Important points you must know about CHC:

1.CHC is available if you are over 18 to meet needs that have arisen as a result of a disability, accident or illness.

2.CHC is not dependent on having a particular illness, diagnosis, condition or disease.

3.CHC is ‘free at the point of delivery’ i.e. when you need it as stated in paragraph 35 on page 14 of the National Framework.

4.CHC covers 100% of the care fees payable, regardless of the individual’s wealth, savings and assets. CHC is free!

5.CHC is payable regardless of who provides care or the place where the care is provided. So, for example, care can be provided in a care or nursing home, hospice, other care facility, or even in the person’s own home.

6.If you are resident in a care home, CHC covers all the care fees, including the cost of accommodation.

7.If you are receiving full-time care at home, CHC covers nursing care plus personal care, such as, bathing, dressing and any additional household cost directly related to care needs.

8.CHC is not means-tested, so wealth should never be a consideration.

In short: CHC is all about putting health needs first, not where you live or how much money you have.

Who gets CHC?

Everyone who receives full-time care and has healthcare needs should be assessed for CHC Funding. However, the public are generally unaware that this free NHS funding even exists! Instead, they are told that they have to pay for their own care and are subjected to means–testing.

To be eligible for CHC Funding, you have to have a ‘primary health need’ which means that the principal reason for care is due to health needs, not social needs.

The phrase, ‘primary health need’ is an expression included in the National Framework for NHS Continuing Healthcare. It is not a legal term, but a description to help identify the boundary between social needs and healthcare needs, and to determine the level and type of care required to meet those assessed care needs.

The distinction is critical in determining which side of the dividing line you fall onto, and consequently, who has to pay for your care.

This is the important bit…

• healthcare needs are provided free of charge by the NHS

• social care needs are provided by the Local Authority (Social Services) and are means–tested

However, in practice, the dividing line can become blurred, as NHS and Local Authorities may battle to suggest that your relative’s care needs fall into the other body’s remit and responsibility for payment.

The landmark Court of Appeal decision in the Pamela Coughlan case (1999), helped to clarify this boundary line and set out the ‘primary health needs test’. The Judgment set out what care could lawfully provide be provided by the Local Authority and what care fell beyond their remit and was the responsibility of the NHS.

Following the Coughlan decision, a Local Authority can only provide nursing care if it is merely:

• incidental or ancillary to the provision of the accommodation which a Local Authority is under a duty to provide; and
• of a nature which it can be expected that an authority whose primary responsibility is to provide social services, can be expected to provide.

As Pamela Coughlan’s healthcare needs were greater than those which the Local Authority could be expected to provide, she was eligible for NHS Continuing Healthcare and entitled to a free package of care.

The key is to look at the individual’s day-to-day nursing and healthcare needs, and consider when taken as a whole, whether they are above and beyond the expectation of the what a Local Authority can lawfully provide. You do this in conjunction with the 4 Key Indicators (or characteristics) – Nature, Intensity, Complexity and Unpredictability of the individual’s needs. Any one, or any combination, of these four Indicators of need, might mean that the individual has a primary health need, and is therefore eligible for CHC free-funded care.

The dividing line between social and health care needs in the Coughlan judgment and the ‘primary health needs’ approach was subsequently incorporated into the Care Act 2014. The Care Act 2014 has been included into the revised 2018 edition of the National Framework for NHS Continuing Healthcare and reinforces the existing boundaries and limits of what care is the responsibility of a Local Authority, and what is the responsibility of the NHS. The Care Act makes it clear that if an individual may be eligible for CHC, they should be referred to the local Clinical Commissioning Group for an assessment.

However, despite this assistance, unfortunately, the boundary demarcation is still not clear enough, and that creates uncertainty and room for the NHS to avoid paying CHC.

Some examples of social care needs to help you…

Social care is often thought of as needing help with things like:

• your well-being
• the activities of daily living
• helping to maintain independence and social interaction
• avoiding risks in vulnerable situations

Common examples of social care needs might include: help with getting in and out of bed, getting dressed and washed, toileting, meal preparation and eating, and assistance when going out shopping or visiting family and friends.

As an example, take an individual who has suffered a partial one-sided stroke. They may be perfectly able to communicate their needs reliably, have full cognition with no behavioural issues, have no breathing problems or incontinence needs, and enjoy a perfectly healthy well-balanced diet. However, they may require additional assistance with dressing, personal hygiene and their mobility, and need someone to accompany them at all times when going out of the home to minimise the risk of falling. This example of social needs may be available through the Local Authority (Social Services) – unless you have enough money, wherein you will have to pay for the care yourself.

Understanding this key difference between social and healthcare needs, could save you the stress and trouble of needlessly pursuing a CHC assessment for your relative if their needs simply aren’t high enough to meet the eligibility criteria for CHC Funding, and in fact, are plainly social needs (and therefore subject to means–testing).

Equally, the distinction is important because, if your relative clearly has a primary health need, but you fail to recognise the difference, they could be lead down the wrong track and end up self-funding their care out of private savings, and even being forced to sell their home, quite unnecessarily!

Joint Packages of Care

CHC includes personal and social care needs which might otherwise be met by Social Services.

In some situations, package of care can be provided jointly by both the NHS and the Local Authority.

If your relative’s care needs are equally funded by the NHS and the Local Authority, then there is an argument to say that their needs are sufficiently high to merit CHC Funding in full. However, your argument is strengthened if the majority of the joint care package is being funded by the NHS. For example, if the NHS are funding 75% and the Local Authority are funding the other 25%. If the majority of care needs are being paid for by the NHS, then arguably that demonstrates an overriding primary health need, and as such, all the funding should be paid for in full by the NHS, and not subjected to means-testing by the Local Authority.

For more information, read our blogs:

Are You Getting A Joint Package Of Care?

What is a joint package of care?

Summary:

Coughlan, The Care Act 2014 and the National Framework combined, draw an important distinction between social needs and healthcare needs.

Remember: It’s all about understanding who pays!

Recognising the difference is vital, as it determines which body is responsible for paying for your relative’s care, or whether they will have to contribute to the cost of their own care.

When you put the maths into practice, knowing the difference could mean paying care home fees of £937* a week / £45,000 a year (*Which.co.uk) or nothing at all!

The difficulty is that often the dividing lines are between social and healthcare needs are blurred, and it is not always obvious which side of the line you fall onto. If in doubt, then you must request an assessment for CHC Funding to ascertain whether your relative has a primary healthcare need.

If the NHS have tried to push your relative down the Local Authority means-tested route or self-funding, despite having obvious healthcare needs, then share your experience with others and explain how you dealt with the situation.

Prior to 2007, each Strategic Health Authority had its own criteria for establishing eligibility for NHS healthcare funding – a free package of care provided by the NHS for an individual’s healthcare needs.

The outcome created a national ‘postcode lottery’ with confusion, uncertainty and inconsistency as to who would be eligible for free funded NHS care and who wouldn’t. Your chances of success largely depended on the area where you lived (hence ‘postcode lottery’), and how each individual local Health Authority applied its own policies when determining the outcome of an application for NHS funding.

The system was fragmented and the outcomes as to who may get funding varied disparately throughout the country.

In 2007, the Department of Health issued a National Framework for NHS Continuing Healthcare. Its aim was to promote a nationwide common tool (or framework), with greater clarity and consistency, and using clear eligibility criteria, designed to help all those administering NHS healthcare assessments, or involved in the decision-making process or the resolution of disputes.

The 2007 National Framework was updated again in 2009 and rebranded as “The national framework for NHS continuing healthcare and NHS-funded nursing care.” Further updates followed in November 2012 and more recently in October 2018. The theory being that more people should be able to access free NHS funding for their longer-term healthcare needs.

According to the Executive Summary, the 2018 National Framework is designed to:

• set out the principles and processes of NHS Continuing Healthcare and NHS-funded Nursing Care (‘CHC Funding’);
• give practical guidance to support staff delivering NHS Continuing Healthcare;
• provide processes for determining whether an individual has a ‘primary health need’ and is eligible for free NHS-funded care;
• re-establish the principal that the assessment process is intended to be ‘person–centric’ – with the individual being assessed at the heart of a fair, consistent and transparent process free from discrimination.

The latest version of the National Framework (2018) aims to provide even greater clarity for NHS assessors, professionals and individuals alike who are involved in the assessment process for CHC Funding, and provide fair and constant access to NHS funding throughout the country. But does it?

In practice, the correct application of the Framework is really only as good as the NHS representatives who have been trained in its use and application.

Here are 6 important areas where the 2018 National Framework has been updated:

1. Assessments for CHC out of hospital.

It is now preferable, wherever possible, for the initial Checklist screening assessment process to be deferred and to take place after discharge, away from the acute hospital setting.

The good: The aim is to get a more reliable and accurate picture of the patient’s longer-term needs, back in their own care setting, rather than in an acute hospital ward. Moving the assessment away from hospital has the added advantage of reducing ‘bed-blocking’.

The bad: Once out of the hospital setting, families will have to wait until their relative is settled into their care environment – whether in their own home, care or nursing home – before the initial Checklist screening assessment takes place. Unless you can secure an interim package of free care upon discharge pending the Checklist, this time delay could result in an individual funding their care unnecessarily for weeks on end.

For more information, read our blog:

What’s new in 2018 NHS National Framework for CHC? Are you getting an interim care package?

2. Early Screening out of the process.

Additional advice is given in the National Framework as to the circumstances when an individual can be screened out of the assessment process early on. For example, if it is obvious that they have no healthcare needs and are clearly ineligible for CHC; or else, their needs are so obvious that they should move straight on to a full assessment; or have a rapidly deteriorating condition and may be entering a terminal phase, then the Fast Track Pathway Tool should be used instead to ensure CHC Funding is in place within 48 hours.

The good: If used correctly, it will save NHS resources and wasting time on cases where the individual clearly isn’t eligible for CHC Funding by screening them out early on; or alternatively, accelerate the process for those who are likely to be eligible, or else direct them down the Fast Track Pathway if at an end of life situation.

The bad: Unfortunately, it can mean that some individuals are subjected to a miscarriage of justice and are screened out prematurely or incorrectly, and so, may miss out on their entitlement to CHC Funding.

For more information, read our blog: Understanding the Checklist Assessment

3. Clarifying the purpose of a 3 month review and annual reviews thereafter, once CHC Funding has been awarded.

The National Framework provides that the package of care should be reviewed regularly by the local NHS Clinical Commissioning Group (CCG) to ensure that it is still adequate to meet your relative’s healthcare needs.

Paragraph 189 of the National Framework states that such reviews should be carried out within 3 months of the eligibility decision to grant NHS Continuing Healthcare Funding, and then at least every 12 months thereafter.

The good: An individual’s healthcare needs can vary over time and are more likely to increase as they become more frail. The intended purpose of these regular reviews is primarily to check the appropriateness of the current care package in place and to make sure that the care plans and arrangements are still adequate to meet the individual’s needs. The review assumes that CHC in place will continue, and so, is designed to reduce the number of unnecessary full reassessments.

The bad: Eligibility for CHC should only be reviewed afresh with a new full assessment carried out by a Multi-Disciplinary Team if the CCG can demonstrate that the needs have changed significantly. Unfortunately, in practice, these ‘reviews’ can be hijacked by CCGs and converted into a full reassessment, catching family representatives unaware.

Annual reviews create high anxiety for families, even if their relative has severe needs. The reason is that, contrary to the National Framework, these reviews present the CCG with an opportunity to reconsider needs afresh and withdraw existing funding (and thereby save funds), rather than merely looking whether the existing care package is sufficient to meet the individual’s assessed healthcare needs. Unsurprisingly, as many families will testify, CHC Funding can be removed upon such reassessments, leaving them with the tortuous task of complaining and mounting a formal appeal, whilst having to privately fund their relative’s care in the intervening period.

4. Introducing new principles for Local Resolution appeals.

If your relative has been rejected for CHC Funding at a full assessment carried out by a Multi-Disciplinary Team (MDT), the revised National Framework sets out a revised process for challenging decisions and launching an appeal.

The good: A new 2 tier approach at Local CCG level has been formalised to allow families to challenge the negative outcome of a MDT Assessment decision in circumstances where CHC Funding has been refused or withdrawn.

This new approach enhances the core principles of the National Framework of the ‘person-centric’ approach and gives families the opportunity to hear first-hand from a CCG representative why their relative did not meet the eligibility criteria for CHC Funding.

The first stage is optional and is an informal two-way discussion with the CCG’s representative. It is intended to address any concerns the family have, promote transparency and information sharing, both as to the scores allocated to the DST and MDT’s rationale when reaching their decision to refuse CHC Funding. If dissatisfied, you still have the option to move to stage 2 and proceed down the road of a formal appeal to a Local Resolution Meeting (LRM).

The bad: In reality, the new Framework merely enshrines the former informal practice of CCGs, inviting families to meet so that they could explain why CHC Funding was refused (or withdrawn). It was, and still is, just a ‘talking shop’, enabling CCGs to tick a box and say that have tried to engage with the family in compliance with the Framework’s person-centred approach. Some find the stage 1 informal review process cathartic. Particularly, if you realise that your relative just isn’t eligible for CHC. But, for those who believe that the MDT’S outcome is flawed or blatantly wrong, the review meeting only adds to their existing frustration and is a waste of time and energy. The reason being, is that the CCG’s representative doesn’t have the necessary clout or authority to unilaterally overturn the MDT’s decision there and then – however wrong you or they may feel it is. Although, on the positive they can make recommendations to review it, and if overturned, would save the CCG the time and cost of preparing for an appeal.

Read our blog: Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision

5. Providing clearer guidance on key areas such as the Fast Track Pathway Tool.

The Fast Track Pathway Tool is an accelerated and abbreviated screening process designed to identify those individuals who are sadly nearing end of life and have a rapidly deteriorating condition.

The good: Using the Fast Track Pathway Tool ensures that individuals who may be entering a terminal phase are assessed quickly, and if positive, provided with CHC funded care within 48 hours of their assessment. This gives their family security and the comfort of knowing that their relative’s care will be paid for by the NHS in the remaining weeks of their life.

The bad: Sadly, what is becoming more common practice is that the Fast Track Pathway Tool is being misused by the NHS as a quick fix to unblock hospital beds. Patients are being awarded Fast Track funding too readily, just to get them out of hospital more quickly and move them into a care setting. Many families do not realise (or are not told) that Fast Track will be reassessed again if their relative survives 3 months from when CHC Funding is awarded. The risk, of course, is that CHC Funding could be withdrawn upon review, leaving families with the daunting prospect of having to find private funds immediately to pay for their relative’s care.

Let’s Talk Fast Track! Vital NHS Funding Withdrawn After 3 Months – The Latest NHS Controversy

Shortcut the assessment process – use the Fast Track Pathway to get immediate Continuing Healthcare Funding within 48 hours

6. Inclusion of the Care Act 2014 – ‘the primary health need test’.

The National Framework 2018 has been updated to include the implementation of the Care Act 2014 which came into force in 2014. The Care Act provides guidance to Local Authorities and councils in relation to social care and helps people to know what care and support is available for their own well-being and to make their lives better.

The distinction between social needs and healthcare needs is critical as it can have significant financial consequences as to who is responsible for providing and paying for your care:

Social care is provided by the Local Authority and is means-tested. Therefore, an individual may have to pay a financial contribution towards the cost of their care (in part or in full) if their wealth, savings and assets exceed the current threshold of £23,500.

NHS Continuing Healthcare (CHC) is paid for by the NHS and is ‘free at the point of delivery’ where there is a ‘primary health need’ ie the main reason for care is due to healthcare needs as opposed to social needs. CHC is payable regardless of wealth or where the care takes place.

The good: The Care Act does not change NHS Continuing Healthcare and places a clear duty on the health and social care authorities to carry out proper assessments for NHS Continuing Healthcare.

Section 9 of the Care Act makes it clear that when a Local Authority carries out a ‘needs assessment’ and it appears that the individual may be eligible for CHC, they should be referred to their local CCG for a CHC assessment.

Section 22 of the Care Act reinforces the landmark Court of Appeal decision in the Pamela Coughlan case (1999) and places it firmly within the National Framework. In Coughlan, the court found that her nursing care needs were greater than those which her Local Authority could be expected to provide and should therefore have been paid in full by the NHS (ie free of charge) because the overarching primary need for care was a health need, not a social need  – the ‘primary health needs’ principle.

The Care Act places a limit on the care that a Local Authority can lawfully provide and reaffirms the boundaries of what funded care falls under their remit, and what care is the responsibility of the NHS.

Following Coughlan, a Local Authority can only provide nursing care if it is merely:

i) incidental or ancillary to the provision of the accommodation which a Local Authority is under a duty to provide; and

ii) of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide.

The bad: The Care Act and the National Framework do not clarify the test for ‘incidental and ancillary’ above. In practice, this means that the boundary lines can become blurred as to whether the primary reason for care is for health needs or for social care needs. This lack of clarity frequently leads to arguments as to which organisation is responsible for funding care.

Some CCGs selectively ignore the primary health needs test set out in the Care Act (and Coughlan before it). So, beware of conversations asking about your relative’s healthcare needs and how they intend to pay for their care. This is wrong. Remember – CHC Funding is never about wealth, but only health! Don’t let CCGs try and push your relative down the Local Authority assessment route (and means-testing) in an effort to save money and avoid their responsibilities for providing healthcare.

How relevant is the Coughlan Decision Today?

Our comment:

On balance, most of the updated changes to the revised National Framework in 2018 are to the good and are undoubtedly intended to be helpful to NHS assessors and individuals involved in the assessment process.

Although much of the content and concepts remain broadly the same as the previous 2012 Framework, the structure and cosmetic layout appears more logical and user friendly. But, whether the Framework is adhered to and applied consistently, or at all, is an entirely different matter!

The unresolved problem is that the National Framework is still open to subjective interpretation, and that in turn leads to the CHC eligibility criteria being applied inconsistently throughout the country and some very odd decision-making – both for and against individuals seeking NHS funding.

Since its introduction in 2007, the Framework has not eradicated the postcode lottery, and so, remains open to abuse by some CCGs, who either ignore it or selectively apply its guidance to suit their own objectives and financial budgeting constraints.

If the National Framework and its guidance are so clear, and the system is working so effectively, then why is the assessment and appeal process so challenging for families? Why are there so many complaints to CCGs about abuse of process, delays, incompetence, flawed assessments, perverse outcomes, hostile and adversarial assessments, and a general lack of transparency – contrary to the Framework’s guidance?

What’s new in 2018 NHS National Framework for CHC? Are you getting an interim care package?

The revised National Framework – what impact will the changes have?

Are Continuing Healthcare National Framework guidelines the same as the law?